What fibromyalgia means to me.
| I have a syndrome called Fibromyalgia. It affects my life in a variety of ways and can range in severity from annoying to excruciating. All things considered, though, there are many worse afflictions one might have and at the very least it keeps my life interesting. One of the many ways which fibromyalgia affects my life is a little thing we fibromyalgics call “Brain Fog” (it’s a non-medical term).
I’ve learned to cope with it fairly effectively I think. Mostly by accepting my limitations, but to a lesser extent developing appropriate coping skills. I think the hardest part of having an issue like fibromyalgia is feeling misunderstood by others. So often in my life others have assumed my capabilities far surpass my very real limitations. It seems that because I appear to be perfectly "normal", many people assume that I must be exaggerating my inability to think, concentrate or complete minor tasks. I wanted to try to explain how my brain works on a moderate to bad day by giving an example of some real situations in my life.
Sometimes I do better than others, but I remember several times in recent months that I’ve stumbled out of bed and sat down and tried to get organized enough to make coffee. This seemingly simple task is often far too complicated for me and I will sit contemplating it all while I do something that comes more naturally… like stare blankly at my computer screen trying to figure out what to do next.
Although it doesn’t lend itself easily to words, I’ll try to describe here the subjectivity of the perception of time. You see, although it is a fact that every day consists of the same amount of time (24 hours) and that can be proven in a variety of ways (the sun for instance) that does not necessarily mean that everyone’s perception of that amount of time will be the same. I know this because I’ve seen time from more than one frame of reference and I am convinced that it is very overrated. More on this later…
As I sit staring blankly at my computer screen, my mind teetering on the verge of consciousness, I am vaguely aware of the fact that I feel very bad and that if only I could obtain from somewhere a cup of coffee, I am sure that I would feel better. Going somewhere is out of the question. I look like a mongoloid Sasquatch (my hair bent and disheveled, dark circles, gray tinge, etc) and lack the energy to take a shower before I have coffee. However, the underlying reason that I cannot go out for coffee is that I couldn’t put together a plan that complex at this point if my very life depended on it. Therefore, I begin to contemplate a plan to get the coffee pot in the kitchen to produce some of the soothing liquid I crave.
Though I have no idea how much time actually elapses between the point at which this idea enters my mind and the implementation of my plan, it feels like it could have been hours, or maybe even minutes. Eventually, I push my rolley chair back and put my fingers on the desk and move toward an upright position. From there I begin to turn and put one foot in front of the other in a semi-shuffle type of locomotion, not unlike that of Ozzy Osborne in that popular TV reality show “The Osborne’s”. In the few seconds it takes to reach the other end of my 900 square foot apartment, my shuffle is in full swing and I have to quit leaning forward in order to slow it down.
In the midst of all of this, something else inevitably interrupts the well-oiled machine that is my thought process. Perhaps it’s that I am hungry or tired or that there is a certain cereal bowl under my bed in my room that has needed to be retrieved and returned to the kitchen for weeks. It matters not what the distraction is, but by the time I get to the coffee pot and realize that the coffee already there is too old to be consumable by higher life forms (and that lower life forms have already set up colonies anyway), a large percent of my brain is already doing something else. I steady myself and try to concentrate. What was I doing again? Oh, I’m hungry. Maybe a bowl of cereal…
I pour my cereal and shuffle off toward the computer desk. When I get there I slow down, turn around and drop into my chair congratulating myself on a job well done. I eat away at my Total Raisin Bran with 2% milk until suddenly it occurs to me that I’m not feeling so well. My head is swimming and I feel like I need some medicine. (OH yes! My morning meds! I almost forgot!) After a while another thought joins the first. I’m not feeling well AND I would feel better if I had coffee. Then, just when I thought I was safe, a third thought joins the first two: I already went to the kitchen for coffee. Where is it? I didn’t get it? [Expletive deleted]!
With a sense of determination, I motivate to an upright position, fingers on desk, push rolley chair back and begin my shuffle once again. I’m leaning forward, grunting with each movement words like “Oh, drrr, eh, dang…” and so on. Finally I reach my destination and pour the elderly coffee out of the coffee pot. [Focus! If only I can stay focused and don’t falter on my quest, I know I will persevere!] I fill the coffee pot with water and try to find filters. I can’t find them, but vaguely remember seeing some on top of the entertainment center in the living room. I shuffle in that direction only to realize at the cusp of the hallway that I need to use the little girls room. I shuffle down the hallway into the bathroom.
After that, I shuffle across the hall and sit down at my computer desk. What a day. I check my email and grab my bowl of now-soggy raisin bran. That reminds me of something, but I can’t quite place what. Oh well, I’m sure it’ll come back to me. I surf the net for a while… a sure way to forget time and kill pain. Gosh I’m tired. Somewhere in the back of my mind I’m vaguely aware that it’s been two hours since I woke up. It doesn’t seem like it’s been that long. Or maybe it seems like it’s been a lot longer?
I need coffee bad. I wonder why this hasn’t occurred to me before. I scoot back my rolley chair and push myself up with my fingers on the desk. I do the shuffle-mutter-locomotion all the way down the hall into the kitchen. I find the coffee half made and attempt to continue where I left off. Soon I realize why the original plan failed. There are no coffee filters. Maybe I should call the police? No, that’s not what you do when you are out of coffee filters. Let me think…
Something about the living room… what was it? Oh yes, I go to the living room and look on top of the entertainment center. The new package of coffee filters is not on top of the entertainment center, but where there is a top of something (now remember this… you can use it later) there is invariably a lower horizontal surface to catch the things that fall off of that something’s top. I check the floor. There I find a new package of coffee filters that never quite made it to the pantry after their trip home from Wal-Mart. [The anticipation is intense!] This is about the point that I usually realize that it doesn’t have to be this hard and it isn’t this hard for most people. [How would I know? I’m not most people… It’s just a hunch... Stay focused!]
Ok, I get the coffee filters back to the coffee pot. Suddenly I’m aware that I feel sharper than I did a mere hour ago. Oh yeah, I’m on a roll. I have the coffee filter in and scoop coffee grounds in and shut the little filter drawer thingy in no time flat. (Only like ten minutes or so.) I pour the pot full of water into the back of the coffee pot, spilling less than half, and decide that there’s no point in just standing there. I’m on a roll, dang it! While the coffee is brewing, I head down the hall. I am no longer shuffling, but am not yet running, so I simply walk toward the shower. Oh yeah! I’m that good!
I shower and dress in record time. I have no idea what comes over my brain, but something actually occurs to me. Not being familiar with this unusual occurrence, I wonder for a moment what the abnormal sensation in my head is. Then I realize that I am aware of something and attempt to decipher what it might be. Oh yes! Today is the last day to pay my electric bill before they tack on a ten-dollar late fee. Well, not on my watch, buddy! I’m going downtown…
I grab my coat and keys but forget my purse as I charge out the door to pay my electric bill before I acquire the dreaded late fee. I start the car and go zooming at a low rate of speed out of the parking lot. I get to city hall and smile smugly to myself about my well-positioned parking space. I get out of the car just in time to realize that I can’t pay my electric bill if I don’t have my purse. I unlock the car door and get back in. I groan to myself an inaudible phrase. I’m not quite sure what I said, but I think I heard the words “wish” and “coffee” in there somewhere.
I slink back home to get my purse. I see the coffee, but don’t want to take the time to drink any right now. I’m too busy pouting and cursing myself. Oh well, I’ll be back in a few minutes. I’ll drink some then. I get back to City Hall and pay my bill. Yesterday was the last day to pay the bill without incurring the late fee. Did I not remember today’s date or was it the date of the deadline I forgot? I remember now that I knew last month, and every month before that for the past year, but why didn’t I know an hour ago? Now I’m really confused. Oh well, maybe next time I’ll remember. I pay the bill AND the late fee and walk back to my car that is now parked a block away.
By the time I get home, I’m exhausted from the day’s emotional roller coaster ride. I decide that nothing about life is fair and I hover over the pot of coffee, glowering at it as if to say, “you look so good... but at this point… I’m sooo tired… the very thought of you… makes me sick.” It’s afternoon by now and I contemplate my day and my life wondering where I went wrong. Am I a victim of a problem beyond my control or is it like many people seem to insinuate (directly or indirectly) that it is somehow a matter that I could control if only I tried harder, tried better, tried to get right with God etc.?
I wonder if it seems like it’s been a few minutes or a few days since I woke up this morning. I consider how good it would be to finally drink that cup of coffee, but I’m so tired that the room is dancing in circles around me. I collapse face first onto the nearest horizontal surface to await restoration… or at least rest. I’ll figure it all out later… after all, I’m sure it will still be there and all still need figuring out.